Restless Legs Syndrome (RLS) Discussion Board

It is dragging me down though and can just hope RLS will go away or a cure will be found. I am so tired of this.

I hear you. But it does improve in some people; the old stories that it was bound to get progressively worse forever aren't backed up by the data.

I didn't know that it could get better.

Yes, it happens. Not rarely either. I first heard of it in the context of a European study - symptoms went up and down in severity with the years, sometimes going away completely; they even called the variability with time a hallmark of the disease. I was shocked. I've seen it come up in a couple of other studies, wish I could dig it up and share but zopiclone is kicking in
here's one

How would one know if it were improving? I know it isn't in me as it is getting worse but if it suddenly cleared up I doubt I would know as I am always taking Suboxone lol

I was going to say that I had wondered the same thing, but it occurs to me that I actually know the answer, because it happened to me. When I changed my diet. The main reason I could tell I was improving was because I was never medicated enough to cover off all the symptoms, so I noticed when they were covered better. Another reason was because I was in the habit of adjusting down or up depending on how bad my symptoms were, not just taking the same dose every day.

So what happened is, after about 3 months on the diet, I found myself taking for example 3 mg instead of 6 mg for my 11 PM dose more and more often, til finally I agreed for my prescription to be lowered by 3mg. (I had told my doctor about it. I was scared, but she promised I could go up again if I needed to.) Then over the next 6 months I reduced another 3 mg. And finally, over the last year, there have been many ups and downs but I just reduced another 3 mg.

Long answer that is veering off topic. Sorry. But if your symptoms are not fully covered, you should be able to tell if they're getting better, as long as you pay attention and dare to try a lower dose when you think you're getting better. Sometimes it backfires, and you lose a day because you've lost the night. It's a difficult risk to take.

I agree with Beth. My symptoms aren't covered 100 %. I notice when they are. I also seem to feel different. The feelings that are there before the symptoms start. I can tell when they are gone too.

For me, the RLS does come and go. I've had months/years of no RLS since it first started when I was in my late twenties and now (50-something). I also had a few months this summer when I was RLS-free. I'd stopped taking oxycodone (20mg, two times a day) and clonazepam (very high dose 3mg/night) over the previous nine months (easy, fast taper off the oxy & long, slow taper off the clonazepam) and the only drug I was taking was nortriptyline. No RLS.

The RLS returned about a week after I'd slow tapered off the nortriptyline in mid-July. Ramped up enough by mid-September that my neurologist put me on pramipexole (whole 'nother thread on that disaster). Still, I had almost two months of no RLS. No idea what brought it back.

Fascinating! I wonder what goes on inside us

Just in case someone searches for nortriptyline, I should clarify that I did have bouts of RLS while I was on it (it did lessen my back pain a lot, though).

My Mom who is 90, has almost stopped having rls. She rarely has it anymore.

Yay, hope! Now, we just have to figure out how to make it to 90. How'd she do it?

It is a mystery!

I've often read that the incidence of WED/RLS increases with age until a certain point - age 70 or 80, I forget - and then seems to decrease. I used to always laugh (bitterly) when I read that, because to me it seemed clear that all the people with RLS had died by then!

But apparently there are indications that the improvement is actually people getting better and this thing with your Mom, skippy, is a great anecdote.

I am 67 and will look forward to 70 with optimism

Polar Bear wrote:I am 67 and will look forward to 70 with optimism

Indeed!